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Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Sort descending Summary
Massachusetts Privacy Died

Amends data security protections to include biometric information, which is defined to include genetic information. 2/13/2020 In senate. Accompanied a study order. Died.

Mississippi Privacy Died

Enacts the Consumer privacy Act. Provides certain rights to consumers such as the right to know the categories and specific pieces of personal information collected and the right to require a business to delete personal information. Personal information is defined to include biometric information such as DNA sequences. 02/05 (H) Died In Committee

New Jersey Other Topics Died

Prohibits discrimination in health programs or activities based on certain factors, including genetic information. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

Oklahoma Employment Nondiscrimination Died

Prohibits discrimination in the selection of job applications, interviewing of job applicants, hiring of job applicants, firing of employees, treatment of employees, or payment of wages on the basis of genetic information. Died.

Virginia Privacy Died

This bill regulates the collection and maintenance of personally identifiable information, including DNA, by education agencies. Died.

Connecticut Privacy Died

Requires businesses to disclose the proposed use of any personal information and to give consumers the right to discover what personal information the business possesses. Consumers may opt out of the sale of such information. Personal information is defined to include biometric information such as DNA which can be used to identify an individual. Died.

New Jersey Privacy Died

Prohibits a teaching staff member employed by a board of education from inputting the individually identifiable health information of a student or members of a student�s family, or conversations concerning such information, into a third party software application managed by an entity that engages in partisan political activity. The bill defines individually identifiable health information as any information, including genetic or vaccination information, relating to the past, present, or future physical or mental health or condition of an individual that either identifies the individual or could reasonably be used to identify the individual. Died.

New York Privacy Died

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

South Carolina Health Insurance Coverage Died

Existing law requires individual and group health insurers to cover mammograms. This bill requires that Coverage for mammograms required in subsection (A)(1) must include benefits for comprehensive ultrasound screening of an entire breast or breasts if a mammogram demonstrates heterogeneous or dense breast tissue based on: (a) the Breast Imaging Reporting and Data System established by the American College of Radiology; or (b) if a woman is believed to be at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing or other indications as determined by a woman's physician or advanced practice registered nurse. Died.

Washington Other Topics Died

Restricts genome editing of human embryos. Died.

Alabama Privacy Died

Creates the Alabama Consumer privacy Act. Allows a consumer to request that a business: (1) disclose personal information that it collects; (2) delete certain personal information; (3) disclose the sale of certain personal information to third parties; and (4) allow a consumer to opt out of the sale of personal information. Prohibits a business from retaliating against a consumer for making a request for disclosure or for opting out and from selling the personal information of a consumer under 18 years of age. Personal information is defined to include biometric information such as DNA. Died.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Indiana Privacy Died

Establishes requirements regarding student education records, personally identifiable information of a student, and certain other information concerning a student. Personally identifiable information includes a DNA sequence. Died.

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage of screening breast ultrasounds and breast MRI, in addition to mammograms, if the patient is at increased risk of cancer based on certain factors such as positive genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

New Hampshire Privacy Died

When an individual consents to receive assistance from a health or social service agency in the state, the consent given to the initial health or social service agency to use the individual's personal information may not be transferred to or retained by any other health or social service agency, network, or entity. No health or social service agency in the state may require a individual's consent to share personal information with another health or social service agency in the state or another state as a prerequisite for such individual to receive services from such health or social service agency, including consent to share details regarding which health or social service agency the individual has received help from in the past and associated information related to that interaction. A health or social service agency must explicitly and in writing inform any individual seeking such assistance that lack of consent will not affect the individual's ability to receive health or social services from the agency and that the individual will not be otherwise penalized. Personal information is defined to include DNA. Hearing on 2/08/2021. Carries over to 2022.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex; requires reporting certain information relating to the collection of data, and provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discriminatory housing practices based on protected status, which includes genetic information. Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to seek, obtain and hold employment without discrimination or abridgement on account of certain characteristics, including genetic information. Also prohibits insurers from refusing to insure or refusing to continue to insure an individual, limit the amount, extent, or kind of coverage available to an individual, or charge an individual a different rate for the same coverage, based on genetic information. School boards also must adopt a policy to establish that the local board of education and school personnel employed by the local board may not discriminate based on genetic information. Charter and nonpublic schools may not discriminate based on genetic information. Died.

Texas Privacy Died

Relates to the capture and use of an individual's biometric identifiers, specimen, or genetic information by a governmental body or peace officer or by a person for commercial purposes. Died.

Wisconsin Employment Nondiscrimination Died

Addresses actions in circuit court alleging discrimination in employment, unfair honesty testing, or unfair genetic testing. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

California Health Insurance Nondiscrimination Died

Creates the California Guaranteed Health Care for All program, or CalCare, to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Declares that all California residents regardless of various characteristics, including genetic information, are entitled to full and equal accommodations, advantages, facilities, privileges, or services in all health care providers participating in CalCare. Carries over to 2022.

Hawaii Privacy, Research Died

The bill establishes requirements for the privacy of protected health information, including genetic information. Entities addressed in the bill include health care providers, health care data organizations, health plans, health oversight agencies, public health authorities, employers, insurers, health researchers, or edu�ational institutions. Died.

Maine Health Insurance Coverage Died

As introduced, a health plan must provide coverage for risk assessment for a BRCA gene mutation and genetic counseling or testing, if necessary. Died.

Michigan Privacy Died

Amends the state genetic privacy law. Changes in introduced version of bill only involve unsubstantial changes in wording of text. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information on any student without the express written consent of the student�s parent or legal guardian. Biometric information is defined to include a DNA sequence and newborn screening information. Died.

Maryland Other Topics Died

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information. Died.

Minnesota Privacy, Research Died

This bill creates personal property rights human biological specimens, defined as tissues, organs and body parts from which DNA may be isolated and requires written informed consent for the use of biological specimens in medical or genetic research. Consent forms must provide at least three options, including consent for a specific research project, consent for future research projects that are yet undefined, or consent for future research projects that are yet undefined, contingent on the research entity returning to seek specific written informed consent if the project is or could be considered controversial. The bill allows limited use of biological specimens for the calibration of laboratory equipment. Measure failed.

Montana Health Insurance Nondiscrimination Died

A health insurance issuer offering individual health_insurance_coverage in this state may not establish rules for eligibility or adjust premiums for any individual or individual's dependent to enroll in individual health_insurance_coverage based on genetic information. Individual health insurance issuers also may not impose any preexisting condition exclusion on the basis of genetic information or request or require an individual or a family member of an individual to undergo a genetic test. Died in Standing Committee.

New York Health Insurance Coverage Died

This bill requires health insurers to cover genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

Tennessee Other Topics Died

Creates a genetic advisory committee. Substituted by 2019 SB 127, which became Pub. Ch. 43 April 3, 2019.

West Virginia Health Insurance Coverage Died

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

Arizona Privacy Died

Establishes requirements for controllers upon the receipt of a verified request from consumers to exercise their rights with respect to the processing of personal data, including genetic data for the purpose of uniquely identifying a person. Died.

Florida Privacy Died

Enacts the Parents Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child�s blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Died.

Kentucky Health Insurance Coverage Died

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.

Maryland Privacy Died

Enacts the Online Consumer Protection Act. Defines biometric information to include an individual's DNA. Died.

Massachusetts Health Insurance Coverage Died

Measure to enhance high quality, affordable health care. The bill includes a provision requiring coverage for genetically targeted drugs for Duchenne muscular dystrophy, if offered to active or retired employees of the commonwealth insured under the group insurance commission. Died.

Mississippi Employment Nondiscrimination Died

Makes it unlawful for any employer or insurer to use the results of DNA testing against a patient or against the patient's consanguineous family members for any discriminatory purpose. Any employer who violates this section shall, upon conviction, be fined up to $5,000.00 or imprisoned for not more than one year, or both. Died in Committee on February 4, 2014.

New Jersey Privacy Died

Makes confidential any part of a 9-1-1 audio recording or transcript that discloses a person's health status, medical conditions, health care services or treatments, medical history, genetic information, or current health insurance plan information by excluding it from the definition of a government record. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination, Privacy Died

Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

Ohio Privacy Died

Requires a health care provider to obtain an individual's informed consent prior to testing for the presence or absence of a communicable life-threatening disease or infection or immune response to disease or infection that is the subject of an epidemic or pandemic. The results of an individual's test, including any partial or complete biometric record of an individual's DNA sequence is the property of the individual and may only be transmitted to the individual tested. 5/27/20 Referred to Committee on State and Local Government. Died.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. 1/13/2021 Read 1st time & referred to Committee on Economic Development, Housing and General Affairs. Carries over to 2022.

Colorado Health Insurance Coverage Died

Amends the health care coverage law for breast cancer screening by requiring coverage for a person with an increased lifetime risk of breast cancer determined by a risk factor model such as Tyrer-Cuzick, BRCAPro, or Gail. 05/02/2016 In Senate Committee on State, Veterans, & Military Affairs. Postponed Indefinitely.

Idaho Other Topics Died

Worker's compensation is payable for disability or death of an employee resulting from occupational diseases, including breast cancer, if certain criteria are met. Criteria includes: (1) diagnosis of breast cancer after five years of employment, before the age of 40, without BRCA 1 or BRCA 2 genetic predisposition; and (2) the disease must not have been revealed during an initial employment medical screening exam or during any subsequent medical review. Died.

Maryland Privacy Died

This bill restricts access to, use of and retention of DNA samples and disclosure of DNA test results without consent with some exemptions. The bill also provides personal property rights to DNA samples and DNA test results and requires the health department to develop a uniform written informed consent form. Penalties are set forth for violations. Measure failed.

California Employment Nondiscrimination Enacted

A health benefit plan offered to a small employer, as defined in Section 1304(b) of PPACA and in Section 10753, may not establish rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the plan based on health status-related factors, including genetic information. Approved by the Governor June 28, 2014.

Louisiana Health Insurance Coverage Enacted

Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. 6/1/21 Signed by the Governor. Becomes Act No. 45. Effective 1/1/2022.

North Dakota Privacy, Research Enacted

This bill amends provisions in the state newborn screening law pertaining to the use of residual dried blood spots for research. The bill states that a person conducting research on blood spots, other specimens, or registry data that is maintained by the health department must follow IRB processes for human research, which must include obtaining parent or guardian authorization. 4/16/2015 Signed by the Governor.

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Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024